The right heart Cath does not hurt at all. They strap you down so you don’t move when they put the tiny wire in. I am now on sildenafil as the Tyvaso clinical trial was difficult and made me cough so much more. In order to get sildenafil, or probably other similar meds, I believe a prerequisite is to have the catheter procedure – I…

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This is…

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I have constant nasal congestion and mucous phlegm – coughing and nose blowing. As someone else said, I have a box of Kleenex on every surface in my house. I am on Breo, Allegra and have been on Flonase/fluticasone and also use Azelastine when necessary. I went to the ENT for constant stuffiness (pulmo thought I had polyps but scan said no)…

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I was on Nerondomilast, Fibroneer Trial, from July 2023 until last month when it ended. I have been on the “real” drug, high dose, for two weeks. I have been experiencing diarrhea – sometimes bad, sometimes ok. I have taken Imodium which helps. The Trial doc says to just take a preventative 1/2 or whole Immodium in the morning. I also have…

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I have had two pulmonologists and my PCP both tell me that the problems the two drugs cause, especially with people (like me) that have IBS or other gastro issues, far outweigh the good that the two drugs do for IPF. It is such a small percentage. I did great for 7 years with IPF until my exacerbation almost three years ago . Now I am on 6LPM…

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CT scan showed no polyps so I think what the pulmonologist saw was swollen and inflamed Turbinates. I don’t know what else it could be !! I have had two shots of Nucala (alternative to Dupixent and I don’t pay for this). I am still having problems but not as much. Nucala also helps asthma.

I have had trouble breathing – totally “stuffy” nose for many months. I have complained to the doctors that when I try to spray something in my nose, most often it just falls back out. Finally, last month my pulmonologist looked in my nose and said “no wonder you can’t breathe – your nose is full of polyps !”……..I can’t have…

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My two cents……..

If your oxygen is “down to 88-92″…do not worry.  You only need to worry if it is below 88.  I am sure that causes anxiety when you think it’s too low and you can’t breathe.

If it gets below that when you get up and do something, then it’s a cause for some help.  At night when I take my CPAP off to use the bathroom,… Read more

I am 74-1/2 and was diagnosed when I was almost 65.  I was stable (no oxygen unless flying)  – meaning out of breath on exertion, etc – until almost two years ago.  I had an exacerbation (no know cause) and was in the hospital for 10 days on 240 mg of prednisone and 30 LPM of oxygen !!  It took a long time to get back to “normal” but I have… Read more

I would be concerned about the mass on your liver and whether or not it could be cancerous.  Could they do a non-invasive biopsy on that first?  I did have a biopsy in 2014 but it was also (as a couple above) to determine if I had NSIP or IPF.  I had been diagnosed with NSIP and the prescriptions for that include prednisone at first and then… Read more

The Sequal Eclipse goes to 3 continuous, but it does go up to 9 pulse – that can help !!

Sleeping with the upper body elevated helps with a lot of things…….coughing, GERD, apnea, etc.  Please do not just put pillows under your head.  This makes you head bow into your chest area and compromises your breathing.  A wedge helps, preferably under the mattress.  Put the pillows under your shoulder/upper back for maximum help. Of… Read more

Be careful that you don’t take too much zinc as it can be harmful in many ways.  My doctor said there has been nothing medically conclusive about zinc.  He said when it gets out of mice trials and into some clinical trials, we could see some help.  But wait til then !  Zinc can be  good in moderation.

Just an FYI….NO Inogen POC’s go up to 6LPM..  They are settings and not LPM.  I have and Eclipse and it goes to 9 LPM on pulse and 3 LPM on continuous.  It is heavy but works for me now so that I can travel.  I am going to attempt Maui in June.  I have two extra batteries and it can plug in if needed, so hopefully OK.  I am on 4-5 pulse for… Read more

I leave things on the floor until I can get to them to vacuum or vacuum/sweep to get them up.  All of my visitors know it’s hard for me to bend, and no one cares.  I also have a grabber tool for bigger things.  I do have cleaners every two weeks for changing beds (just CAN’T do that), vacuuming and cleaning kitchen and baths thoroughly.  I… Read more